Meeting the needs of older people with disability when the NDIS falls short –

Posted February 25, 2019

This was the first session at the Advocacy Sector Conversations forum held at the Queen Victoria Women’s Centre on 14 February 2019.

Overview

There has been a strong focus on the NDIS over the past few years – but it isn’t the only scheme that is relevant to people with disability in Victoria. There are many people with disability who are over the age of 65 who do not meet the age eligibility requirements for the NDIS. Most of these people will be forced to turn to the aged care system to access the disability-related support they need. Lauren Henley, Policy Advisor, Council of the Ageing (COTA) tells us about some of the tools and resources available to help older people with disability make the most of what’s currently on offer. We will also discuss some of the policy gaps still preventing older people with disability from accessing support in a timely and equitable manner. Lauren will tell us more about work that is already being done to address some of these shortfalls and how we can get involved.

If you are already accessing support from the National Disability Insurance Scheme when you turn 65, you can choose to continue receiving services under the NDIS or can opt to receive support through the aged care system instead. An individual will, however, cease to be a participant of the NDIS when:

The person enters a residential care service on a permanent basis, and this first occurs after the person turns 65 years of age (NDIS Act, section 29(1)(b), or

The person starts being provided with home care on a permanent basis and this first occurs after the person turns 65 years of age (NDIS Act, section 29(1)(b)

Audio and transcript

MELISSA HALE, DARU COORDINATOR
Now I would like to introduce Lauren Henley. Lauren is the Policy Advisor for the Council of the Ageing and also a very prominent disability advocate and I’m sure you’ve all seen her around here before.

Today Lauren will talk about meeting the needs of older people with a disability when the NDIS falls short. There are many people with disability who are over the age of 65 who do not meet the age eligibility requirements by the NDIS. Most of these people will be forced to turn to the aged care system to access the disability-related support they need.

There are a lot of things we need to know and I for one am really looking forward to hearing Lauren as I’m sure you all are too so I will hand over to Lauren.

LAUREN HENLEY, POLICY ADVISOR, COUNCIL OF THE AGEING (COTA):
Good morning everyone and thanks for making the effort to come along today. As Melissa said my name is Lauren Henley and I’m the Policy Officer at Council on the Ageing Victoria, the leading not for profit organisation representing the needs and rights of people aged 50 plus in Victoria.

We’ve got an hour together this morning and an awful lot to get through but I’m going to do my best to give each issue the attention it deserves. The overall subject of this presentation as Melissa said relates to support for older people with disability. I’ll be giving you opportunities to make comments and ask questions throughout. I’ve decided not to use a power point presentation today so unfortunately you’re just stuck with me.

I want to kick things off by reminding everyone what Australia’s obligations actually look like in relation to support for people with disability. The Australian Government is a signatory to the United Nation Convention on the Rights of Persons with Disabilities, and has therefore made a legal commitment to uphold the rights that are set out in the Convention this includes the right to personal support.

The steps to be taken to implement the Convention at a national level are outlined in the National Disability Strategy 2010 to 2020. The strategy sets out to achieve the following two outcomes in relation to personal support:

A disability support system which is responsive to the particular needs and circumstances of people with complex and high needs for supports and

Personal and community support services are available to meet the needs of people with disability, their families and carers.

There’s been a really strong focus on the NDIS over the past few years from both Government and the community sector but the outcomes referenced under the National Disability Strategy goes far beyond just the implementation of the NDIS. Absolutely everybody, Victoria’s current State Disability Plan makes no secret of the fact that the NDIS will only cover a fraction of Victorians with disability. The strategy states that there are more than one million people with disability living in Victoria and that the NDIS is only expected to provide individualised support to around 105,000 of these people.

One of the largest groups of people who will miss out on receiving support under the NDIS are older people. Many of you will be aware that the NDIS Act, that piece of legislation that establishes the framework for the National Disability Insurance Scheme, includes an age eligibility requirement. The requirement is that a person must be under 65 years of age at the time of making an access request for the scheme. So anyone who happened to be over 65 when the NDIS rolled out in their areas is automatically out – and that’s an awful lot of people.

The question then comes to how those people who do not meet the age eligibility requirements for the NDIS can access the specialist disability support they need and the answer is still relatively unclear. I’ll tell you what we know so far. People who are ineligible for the NDIS but were already receiving state funded disability services prior to the roll out of the scheme were promised that they would continue to access services under the Commonwealth Continuity of Support Program. Well specific continuity of support arrangements were meant to be finalised between the Commonwealth and the state of Victoria by March 2016.

There is still wide spread confusion about the implementation of the program in Victoria. There is also no clarity of what will happen to this program after July 1st this year when the NDIS is fully rolled out. The fact that the implementation of this program has not gone as planned has been well documented in a number of reports including the Productivity Commission’s recent report on the Review of the National Disability Agreement.

We’re going to revisit that particular report later. For now, though I want to focus on where people can go to access support. As of January this year, all older Victorians who did not meet the age eligibility requirements of the NDIS will need to access supports from the aged care system. Over the past few years, many older people with disability have already been filtered into this system because it’s been the only option available to them.

Unfortunately, though the aged care system may not fully support peoples disability related needs for support. We’re going to get into the systemic issues and potential solutions a little bit later but for now, I want to focus on making sure people know how the aged care system works so we’re all on the same page.

At present, there are three different types of support available under the aged care system:

Commonwealth Home Support Program

Home Care Packages

Residential Aged Care.

Because our time here today is limited, I’m just going to focus on support that is provided in the home – so this falls to either the Commonwealth Home Support Program or the Home Care Package Program previously known as Home and Community Care or HACC.

The Commonwealth Home Support Program provides services such as help with housework, personal care, meals, social support and group activities, nursing care, Allied Health and home maintenance. It’s the entry-level program that exists within the Aged Care System so it provides the most basic level of support and you can’t access case management for services that are provided under the Commonwealth Home Support Program.

It’s really important to know that you’ll be asked to make a financial contribution to the services you receive under the Commonwealth Home Support Program and this generally equates to 20% of the overall cost of each service. Some providers do charge more than others.

People with high support needs may be better suited to a Home Care Package. This is a package of individualised funding that is allocated to you and can be spent on supports and services that best meet your individual needs. There are four different levels of funding available depending on your support needs and these funding levels are predetermined. Again, you’ll also be asked to make a financial contribution towards your care and support needs.

If you want to be assessed for services under either the Commonwealth Home Support Program or the Home Care Program, you need to contact the My Aged Care Contact Centre. They will ask you some initial screening questions and then refer you for further assessment.

I don’t want any questions right now about what’s not working because we’re really going to get into that in a lot of detail later but if anyone has got some brief questions about how the Aged Care System works or how to access services I’ll do my best to answer those before we move on.

(No questions)

All good, fantastic. Okay, so Home Care Package is the type of support that will be accessed by most people with permanent disability and there are a lot of things that people will need to know to make sure their rights are upheld.

There’s a resource that’s been developed by the Australian Competition and Consumer Commission, so ACCC, called Home Care, A Guide to your Consumer Rights. It’s a great resource and it will tell you everything you need to know. I really recommend you check it out. I think there are some printed copies available here today so you can even grab one before you head out.

Before we move on to looking at the systemic issues I might just see if we can use this opportunity to do some collaborative learning. I’d like to hear some experiences from people in the room, just in terms of have you had people come to your service asking for assistance or guidance in navigating the aged care system? And how have you found that journey of being able to assist them? Do you have any advice for other people who might be faced with that dilemma?

I might start with you Kristin because I know what you’ve been up to. Kristin Nuske works as the Support Linkages Officer at Blind Citizens Australia. It’s a fairly unique role from what I’ve seen so would you like to talk a little bit about your role and how you support people with navigating the aged care system, Kristin?

KRISTIN NUSKE, SUPPORT LINKAGES OFFICER, BLINDS CITIZENS AUSTRALIA:
Sure Lauren, I guess since I started at BCA my works been across the NDIS, people accessing that pathway versus, well either that or My Aged Care. I suppose for the most people have mostly been focusing on the NDIS.

I guess in my experience there’s been probably most times people in that category don’t come forward they either don’t have the confidence to ask questions or they can’t be bothered. I think in part that’s because of the information streams that are made available to them. I think we’re relying on My Aged Care, which is largely a website, which has a lot of information on it so people have trouble accessing that information in the beginning.

Usually people have brought their issues to my attention when we first did a whole lot of teleconferences last year. That gave people an opportunity in a sort of fairly comfortable environment to raise a whole lot of concerns and questions. I think that was a really good forum those small groups where people can really share and also understand that there is a common theme within problems that were occurring.

Some of the things that come to my attention, I guess working with people that are blind and vision impaired, have been being able to access information in a format that’s suitable for them. I know Lauren’s clearly aware of that, but working with Governments around making those systems, well acknowledging that there is a difficulty or a barrier, and then working towards solutions to change that has been a huge problem for people.

Making decisions is hard enough for all of us but when you don’t have the information available to make decisions that’s rather unfortunate off course.

LAUREN HENLEY:
I think my observation is that that has been one of the systemic failings here is access the information. Knowledge is power as we all know and you can’t get the support you need under a scheme like My Aged Care if you don’t know how to navigate it, and it is a complex scheme.

KRISTIN NUSKE:
Certainly.

LAUREN HENLEY:
I understand BCA, Blind Citizens Australia has developed some fact sheets as well is that right Kristen?

KRISTIN NUSKE:
Yes, that’s right and largely the information that’s in our fact sheets came from the teleconferences that we ran last year. They were from people all across Australia so our membership were invited to join our teleconferences and we facilitated small group discussions around the many issues that people were facing.

A lot of that was around things like contribution towards the care that they may be eligible to receive. People are really confused about the costs associated with that and why they should be paying a contribution. Breaking down some of that cultural stuff was really valuable during that time.

LAUREN HENLEY:
I think also knowing what your rights are around co-contributions because as I mentioned some providers charge more than others. There are a lot of different rules and caveats around that requirement to make a co-payment and I think it’s very very hard for people to understand that.

KRISTIN NUSKE:
I think just a few months ago My Aged Care sent some information around which stated that all providers or Home Care Packages now are required to advertise their costs on their website. I don’t know whether that’s come into play as of yet and whether people are actually doing that but I guess we’ve known for a long time that a lot of agencies are making a lot of money. There’s a need for transparency around the cost now. Small steps.

LAUREN HENLEY:
I have had a look at the fact sheets that are available through Blind Citizens Australia and I’m very impressed because it is hard to access the information that’s around and really condense it into a digestible format. I encourage you if you’re feeling a little bit confused about anything to have a look at the fact sheets on Blind Citizens Australia website. Thanks so much Kristen.

KRISTIN NUSKE:
Pleasure.

LAUREN HENLEY:
Is there anyone else that would just like to talk about the work they’ve been doing to try and get information out to support older people with disability? I know Blind Citizens Australia has been doing a great job but I think we need to learn from each other here because there’s a lot of gaps and I would just like to get a sense of what’s happening in this space.

SIMON ANDERSON, DEAF VICTORIA:
My name is Simon Anderson, speaking through an interpreter. I’m from Deaf Victoria and I think we’ve already had some discussions about this previously but for the benefit of everybody here, the NDIS has been really amazing for deaf people like me who are under 65. Finally, we have an efficient access to interpreters and we can be out there in the community having that access to interpreters.

In some ways, the NDIS is very exciting and it’s really pleasing to see but for people in the deaf community who are over 65 they’re not receiving the same benefits. Really for a deaf person who is in their 70s we are living the same experiences, we have the same difficulties in access to communication out in the community but unfortunately there is nothing for them to have that same support.

For those who in the older age bracket of being over 65 I mean where do we go and what can we do about that? From my view it’s that the Government are saying oh, it doesn’t matter they can’t access the NDIS they’re over 65; there’s that My Home Care Support so that’s the equivalent. But really, it’s not an equivalent because for a deaf person their needs are for communication. It’s not about the care the physical care so it’s about access to communication.

Deaf people physically are mobile and when somebody comes over to their house for one of the assessments they will notice that everything is okay, they don’t need any home care but at the same time, they’re missing out because the communication access issue is not part of that assessment. That’s one dire issue that we can see right now so unfortunately deaf people who are in that bracket of over 65 they’re not receiving the same care as others who are under 65 and receiving the NDIS.

Do you remember the Disability Care well before when they changed the name and the Governments attitude changed and it was all about care, leading somebody down the street having that guidance? I mean yes, that is support but often support is not like that. The attitude of the Government needs to change in order to progress further.

LAUREN HENLEY:
Thank you so much for raising those issues. I think we will move on to the systemic failings now because we’re kind of getting there anyway. But I think communication support is a really really critical issue.

I had a meeting with Parkinsons Victoria a couple of weeks ago and I hadn’t even thought through some of the implications around this. They said to me that 90% of their clients who are over the age of 65 need some sort of communication support or some sort of communication device.

Now let’s think about a scenario, I mean it’s isolating enough if you don’t have that support in everyday living, when you’re living at home in the community. Now think about being in a residential aged care setting. You are isolated, you can’t participate in activities that are going on around you but more importantly you have people around you making decisions about your life, about your care and support, about your end of life decisions and in some cases, you’re completely powerless to have a say at all.

I just think that’s disgraceful. Obviously, there’s a lot of gaps that need to be addressed and we might get into those now. We’re going to dissect why the support that’s currently on offer is insufficient and why we need to be advocating for change.

As we just touched on older people with disability are now being rapidly filtered into the aged care system. The Parliamentary Joint Community on Human Rights has expressed concern with this arrangement from as far back as 2012, noting, this assumes that the aged care system does, or will, deliver all of the forms and assistance of support that is required and is organised in accordance with the principles and operates in compliance with the obligations set out in the Convention of the Rights of Persons with Disabilities and the National Disability Scheme. They have very long sentences these Government reports!

While the incidents of disabilities may increase with age, the assumption of a person who has lived with disability for many years can transition without difficulty to a different system that may be organised around different principles deserves further examination. Yes, it does require further examination so we’re going to jump on that right now and investigate why things are not working.

The first barrier to access relates to a lack of knowledge about the support options that are available and Kristin touched on this already. Federal and State Governments have continued to inject significant amounts of money into projects that are designed to inform people with disability about their rights under the NDIS. But there has been no information provided to people with disability who are over the age of 65 to inform them about My Aged Care as it relates to the specialist support needs of people with disability. As a result, many people are falling through the cracks.

In fact, the Information, Linkages and Capacity-building framework was meant to play a critical role here, but that’s not how things have panned out. Having now jumped into the aged care system after working in the disability sector for the past 10 years, let me tell you that it’s an incredibly complex system and is not easy for people to navigate.

The next issue relates to cost. Under My Aged Care as we’ve already touched on older people with disability are asked to make co-payments towards any services or supports they need. Not only is this not required of participants under the NDIS but the services and supports that are required by people with disability can also be far more cost prohibitive than those of the average older person and the assistance on offer only goes so far. For this reason, people often end up having to self-fund services or simply go without.

The third issue relates disability awareness and, trust me, I’m hearing a lot of stories to indicate that the NDIS is not without its problems in this area either. Remember the aged care system was set up to accommodate the needs of people experiencing deteriorating health due to ageing not people with permanent and profound disability. Many of the staff within the aged care system are largely unfamiliar with the broad spectrum of needs with which people with disability may present including those who are responsible for undertaking individual assessments.

The final issue relates along waiting lists. There are only a finite number of Home Care Packages available so you’re literally waiting for someone to die before the correct level of support becomes available. Research shows that many people end up passing away or having to be moved into residential care while still on the waiting list for support.

These are the overarching issues but now I want to narrow the conversation a little bit and focus on an issue that Council on the Ageing Victoria has been actively working on over the past year or so and this is access to assistive technology.

I might get you to just have a chat in your table groups with the person next to you now. I want to think about if you’re a person with disability, have a think about the aids and equipment that you need to access on a daily basis that enable you to live independently and be included in the community. If you don’t yourself have a disability think about some of the people, you work with.

I want you to think about the activities that you wouldn’t be able to do in the same way if you didn’t have access to those aids and equipment and how that would impact on your life. I will give you a couple of minutes to do that.

(small group discussion)

We could talk about this all day but what I might do now, I might see if we can find someone on two of our tables that’s happy to report back on some of the things that were discussed on that table. Do we have any volunteers in the room?

BARBARY CLARKE, POST POLIO VICTORIA:
Barbary Clarke, Post Polio Victoria. I had an interesting one yesterday at our meeting in that a lot of polio survivors get their equipment provided by SWEP. You might have a very specifically designed wheelchair but if you go into residential aged care that specifically designed wheelchair belongs to SWEP so you have to give it back.

The aged care facility is supposed to provide you with a wheelchair. If they have a collapsible wheelchair with a canvasback, they will give that to you and think that is sufficient to your needs. If you have two full length leg callipers which bend at the knee which cost $1,600.00 per side, I wonder what the aged facility is going to provide you with and at what cost.

LAUREN HENLEY:
As I understand it, I’m not a wheelchair user myself but that’s a critical tool in your everyday living. Really it’s an extension of yourself so you need the chair that is best designed to meet your needs and to have that taken off you when you go into residential aged care and be replaced with something else… I don’t think anyone would like to be put in that decision.

BARBARY CLARKE:
Ditto with the callipers.

LAUREN HENLEY:
One more person to report back…

SUSAN ARTHUR, POSITIVE POWERFUL PARENTS SELF ADVOCACY GROUP:
My name is Susan Arthur from the Positive Powerful Parents Self Advocacy Group and Reinforce. On our table we talked about for the older people who have hearing aids that they didn’t get their hearing aids and they can’t hear people so that leaves them socially isolated.

For myself, I’m young so I’m lucky I did fall into the NDIS criteria but I imagine myself a lot older than what I am and maybe getting my wheelchair taken away from me because I can only walk short distances, then I would be stuck at home and what would that do to my mental health?

The only other thing I want to bring up and I don’t think we can touch on this today but it’s a concern of mine, that I’ve been told that yes Australia has signed and ratified the United Nations but that does not make it law.

LAUREN HENLEY:
Yeah, that is correct but they’ve embedded the Convention into domestic policies. There are still ways in which we can hold Government accountable and we need to hold them accountable. That is a good point thank you very much.

SUSAN ARTHUR:
Thank you.

LAUREN HENLEY:
We’ll talk now a little bit about the context surrounding assistive technology. At present under the current system, an individual’s assistive technology needs are not actually assessed at any stage during an aged care assessment. The entry level Commonwealth Home Support Program only provides funding for aids and equipment’s to the value of $500.00. This means that most people requiring assistive technology will need to apply for a home care package but this isn’t working either for several reasons.

Not only can more expensive aids and equipment eat up an individual’s entire funding package and not leave them with anything else left, but it’s not uncommon for people to wait two years or more to be allocated with a package in the first place.

There are still state based aids and equipment programs and I know someone has already referred to SWEP, the State Wide Equipment Program that are able to fund assistive technology for people who are not eligible for the NDIS. But there’s a number of issues with these services as well.

Firstly, there has been no commitment from State and Territory Governments including the Victorian Government to continue funding these programs beyond July this year.

Secondly these program require the applicant to make a significant co-contribution and the level of subsidy available hasn’t increased to keep up with market trends.

Thirdly, if programs are plagued by long waiting lists with the persons assistive technology needs often having changed significantly between the date of prescription and receipt of the technology that has been recommended which is particularly problematic for people with degenerative conditions.

Finally, there are a limited range of aids that can be funded under these programs. The concept of reasonable and necessary simply doesn’t exist which means that the options available might not be the most appropriate to support an individual’s needs.

Does anyone have any comments or questions, any of their own experience they would like to share in terms of the failings of whether it’s the State Wide Equipment Program or the Aged Care System that’s not providing that technology in a timely manner?

I want to preface this by saying that particularly me and my role at COTA Victoria; we are looking for case studies. It’s often that lived experience that helps to drive change in these areas. If you do have case studies or you know of case studies then it would be really great if we could get together and have a chat after this session and just talk about how we might be able to collect that information.

For now does anyone want to share their own experiences or experiences that they know another person may have had in relation to accessing assistive technology? This is just for over 65s.

AMANDA, LEADERSHIP PLUS:
Hi Lauren, It’s Amanda from Leadership Plus, Disability Advocate. I’ve got a tailor made case study for what you’re talking about. A lady who is living independently she’s got a degenerative condition she has MS. She is 67, she got a continuity of support package but her disability support needs off course changed. She needed to move – she didn’t need to but she was advised she needed to be placed into aged care.

Now she’s got a wheelchair that’s old and about to be no longer working but off course, she’s not eligible for anything, as I understand it beyond a standard wheelchair once she’s in aged care. This will not suit her support needs at all. Because it’s a degenerative condition, she will probably need another wheelchair in another four or five years. I would really like some advice on how we can assist her to get that equipment that’s custom made for her.

LAUREN HENLEY:
Unfortunately, as is the nature of this session, there’s not really a clear answer to that or an easy fast solution to it. I encourage you to give us a call at COTA Victoria after this session and we will do what we can to assist with this case.

It comes back to some of the systemic failings around the aged care system more broadly especially when talking about issues for people in residential aged care. They aren’t concerned with giving someone a wheelchair that will enable them to still get out of the aged care facility and participate in things in the community. It’s really for want of a better term its Heavens Waiting Room, send people to aged care facility just to exist not to live and that really needs to change.

As you can see, things are pretty damn messy and this is why council in the Ageing Victoria formed ATOP, which stands for the Assistive Technology for Older People Alliance. We’re an alliance of Victorian and peak disability advocacy organisations and consumer advocates who are lobbying for a solution to meet the assistive technology needs of older people with a disability.

We meet on a regular basis to map out our advocacy efforts and last year forwarded a communique to the relevant States and Federal Ministers outlining the current policy context and proposing some potential solutions. Right now, though policy is on our side and we need the help of as many organisations as possible to lobby for change.

Note that a lot of what I’m about to say will also apply to younger people who aren’t eligible for the NDIS or who are unable to access the supports they need under the NDIS due to these supports not being covered. This whole big mess really comes down to a lack of clarity about who is responsible for funding what and this is ultimately a failure of the Council of Australian Governments to address these issues as part of the transition to the NDIS.

There is a committee that exists within the Council of Australian Governments called the Disability Reform Council or DRC and this committee has responsibility for all policy matters relating to disability. The Disability Reform Council is chaired by the Commonwealth Minister responsible for disability and consists of Commonwealth, State and Territory Ministers within Disability and Treasury.

Trust me, I’ve had a look at what’s been discussed at meetings of the Disability Support Council over the last few years. It’s not really a closely guarded secret. You can find it all online and, surprise surprise, it all relates to the direct implementation of the NDIS. Little attention has been given to monitoring and addressing gaps that have been created since the NDIS commenced roll out. There is certainly no attention being given to the needs of those older people with disability who do not meet the age eligibility requirements for the scheme.

There is some good news though. Many of you would be very familiar with the National Disability Agreement. It was produced around a decade ago and it sets out obligations for the Commonwealth Government and State and Territory Governments in relation to funding for disability services. It basically outlines who is responsible for what but it hasn’t been updated since the NDIS commenced roll out and the landscape has obviously now changed quite a lot.

For this reason, the Productivity Commission was recently asked to review the agreement and make recommendations to Government on what should happen next. The final report from the review has now been handed down and it makes a couple of recommendations that support our cause. The report states a gap analysis which involves identifying community needs and Government objectives and assessing them against the services that are available or plans should be conducted through the Disability Reform Council as a matter of urgency and be completed by the end of 2019.

This would help Governments comprehensively identify where gaps are and would also support service providers in their planning. Where gaps are due to unclear responsibilities the analysis can provide a basis upon which Governments can agree on who is responsible for addressing gaps. The report also states to enable a gap analysis to be undertaken and to provide certainty for people with disability, Government should immediately articulate exactly what services they will provide, and how, to people with disability. This is particularly important for services outside the NDIS where the weight of concern about service gaps lies.

Any questions or comments about these recommendations before I move onto telling you what you can do to help?

MELISSA HALE:
Nothing Lauren.

LAUREN HENLEY:
Okay.

MICHELLE WATSON:
Hi, my name is Michelle Watson. I was just after the name of that productivity report.

LAUREN HENLEY:
It is the report from the Review of the National Disability Agreement. It’s available online. There is also an overview document if you don’t have time to read the hundreds and hundreds and hundreds of pages in the full report. The overview document is fairly comprehensive it includes all of the recommendations but it makes for a very interesting read. If these are issues, you’re concerned about I highly recommend you check it out.

In light of this information, there are a few things that you as individuals or your organisations can do to help lobby for change. Firstly, you can contact one or both of the Ministers who represent the State of Victoria on the Council of Australian Governments Disability Reform Council. The names you need are:

The Hon Luke Donnellan, Minister for Ageing Disability and Carers

The Hon Timothy Pallas, MP, Treasurer for Victoria.

Ask them to act on the recommendations from the Productivity Commissions Report on the Review of the National Disability Agreements by:

Confirming which disability services they intend to continue funding beyond July this year, and

Take proactive steps to champion the cause of older people with disability at meetings of the Disability Reform Council by requesting that a gap analysis is undertaken as soon as practically possible.

If you feel so inclined, it would be great if you could also get in touch with me or someone else at Council for the Ageing Victoria and pass on a copy of your correspondence so we can track how many organisations are concerned about this issue and follow up with Government as appropriate.

The next thing you can do is lobby the Federal Government to act on this issue, remembering we’re in an election year so if your organisation is planning to meet with major parties leading up to the Federal Election this would be a great thing to include in your election platform. Finally, you can consider how your organisation and the people whom you work with can get involved in the Royal Commission into Aged Care Quality and Safety.

The Royal Commission was established in late 2018 and will be accepting submissions until at least June this year. The final report when handed down in 2020 will make very specific recommendations to the Australian Government outlining what needs to be done to fix the aged care system. Pleasingly a major focus of the Royal Commission will be investigating issues relating to the intersection between Aged Care, disability services and the health system.

It will look at what needs to be done to make sure there is effective coordination between these systems so that older people including those with disability can access appropriate support when needed. Some of the key things that will be investigated throughout the Royal Commission are of particular relevance to older people with disability. These themes include quality and safety, access and inclusion, diversity, responses to social isolation and loneliness and the availability of and barriers to accessing services.

Any comments or questions about any of those advocacy initiatives and what you can do to get involved?

MELISSA HALE, :
Lauren we have a comment from the last part.

QUESTION:
I’ve passed this able body most of my life and now I’m not eligible for NDIS because I’m over 65. As far as I gather, My Aged Care will not provide me any of the therapies that I need to keep my body working and keep me out of aged care.

LAUREN HENLEY:
I wish I had a quick solution to that problem I really really do because there are so many other stories like yours out there. I don’t know why this hasn’t been jumped on sooner. It frustrates me to no end. I was so excited just to have the opportunity to talk about it today because no one seems to be listening.

As I said, we really need to band together. There are so many people that are just going to fall through the cracks. The numbers I referred to earlier, more than a million people with disability in Victoria and it’s only a very small fraction that will be covered by the NDIS.

MELISSA HALE:
Any other questions or comments?

ALI:
Hi, Lauren my name is Ali. I’m a volunteer citizen advocate and I work with a lady with an intellectual disability who was lucky enough to get an NDIS package. She’s not quite 65 but she’s nearing that and we all know that housing, accommodation options for people with intellectual disability are running short.

She’s at the point where she’s almost about to need residential aged care. I haven’t been able to get any support whatsoever or knowledge about the pathway for people with an NDIS package. She’s still physically very capable.

She still wishes to contribute to the community and actively get involved with her day service. It’s the residential.

I was looking for some guidance on how to steer her into residential aged care but still maintain her NDIS package because there’s a bit of a myth, I don’t know, that there’s one or the other.

LAUREN HENLEY:
That’s an interesting issue and it is something I wanted to raise today as well. We’ve been focusing a lot on what happens if you are over the age of 65 when the NDIS is rolled out, and therefore you’re not eligible. But there is another category of people, and that’s those who are already on the NDIS, and as they become older, you do have the choice to remain on the NDIS after you turn 65.

But the rules are once your support requirements are primarily age related. For example, if she’s moving into residential aged care you move over to the Aged Care System and no longer receive your NDIS funding, that’s correct. What we are wanting is a lot more case studies around this. We need to be tracking what happens to people as they reach that age, as they get older and forced to move into aged care.

There may be some loop holes in legislation we can draw upon to make sure those people still have that NDIS funding available when they’re in residential aged care. Again, it’s not something that people are actively looking at. I’d really be open to continuing this conversation with you after today because it’s certainly something that we at Council of the Ageing Victoria are very very interested in trying to address.

KRISTIN NUSKE:
Lauren its Kristin. I was just going to say depending on, sorry Ali, I’m just thinking about your question. If the person wants to remain at home for example and can function quite well at home then there would, be an opportunity I expect through her NDIS plan to pursue options that might allow her to stay at home… You’ve had a go? Yeah.

LAUREN HENLEY:
There are different support options available. I’m not saying there will be a solution but I think half of the problem with all of this stuff is just navigating the system because it’s so confusing and so complex. We do have advocates that work specifically in this space and they can do that navigating for you. Do give us a call and we will certainly see what we can do to help.

MELISSA HALE:
Okay we have another question.

MARY ANN JACKSON:
Hello Lauren, my name is Mary Ann Jackson I’m an architect planner and Access consultant. I’m also doing a PhD in Accessibility in the Built Environment but I’m also now working with Melbourne University on a project to do a home modification and we’re going to be looking into home modifications in the area of NDIS Aged Care Reform etc. I definitely want to make some connections with other people that are involved in that as well.

There’s a bit of a problem with home modifications funding because Victorian Government, the Archicentre services, the home renovation service that’s been stopped. What’s going to take its place and whether there’s enough funding for reasonable home modifications anyway?

My professional experience with home modifications to do with the NDIS is that that’s not simple. So yes, I’m just flagging that we are involved in this project to do with home modifications and I think it would be good if I could make some contacts with people here.

LAUREN HENLEY:
Yes and the last couple of questions that have come up have related to that intersection between what happens when one set of services stops and you’re expected to go to aged care because nothing else is available. I think these are the sorts of issue we need to be bringing to the attention of the Royal Commission because they’re looking at the intersection between disability services and the aged care system.

We need to be looking at these gaps and the Victorian Government it’s not just the Victorian Government they’re all guilty of it, they’re just stopping the services assuming the NDIS is the fix all but it’s not a Band-Aid solution to disability.

There’s so many things they need to do and so many other services that need to be continually funded beyond July this year and we need to hold Government accountable to make sure that happens.

Any other questions, I’ve got through all my content so we can have a bit of a free for all until we get kicked out.

MELISSA HALE:
We’ve got about 4 minutes.

COMMENT:
Nicki Heath, Melbourne University has written a PhD which has just been released recently on the difference between ageing and ageing with disability.

LAUREN HENLEY:
Where can we access that that sounds fabulous?

COMMENT:
If you give me an email address, I will send you a link to it.

LAUREN HENLEY:
That’s excellent that’s great and when was that released?

COMMENT:
Last year.

LAUREN HENLEY:
Okay so fairly current. That would be really interesting to have a read of it. Any other questions/comments? And I can’t stress enough the people who have asked questions relating to very individual personal stories of people who aren’t getting the support they need, please consider making a submission to the Royal Commission.

If they don’t hear from people with disability then these issues really aren’t going to get prioritised at all. We need to make sure as many people as possible are supported to tell their stories.

MELISSA HALE:
No more questions? No…

LAUREN HENLEY:
The other thing is the Assistive Technology for Older People Alliance that I referred to that is coordinated through Council on the Ageing Victoria. If your organisation would like to be informed of the work we’re doing, or you would like to be involved and attend meetings, then all you need to do is contact me after today’s session and we can figure out how to make that happen.

MELISSA HALE:
Thank you very much Lauren. It’s been really fascinating to hear about what’s happening in this space. It’s really a big concern I think it affects every single one of us.